Background

Public involvement (often referred to as patient and public involvement or PPI) has evolved into an essential aspect of research practice, which endeavours to integrate the voices of the public into the research process [1,2,3]. The National Institute for Health Research (NIHR) defines PPI in research as, “research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ ‘them” [1]. The public are ‘experts by experience’, with vast experiential knowledge that offers a specific perspective to research [1, 4]. The NIHR is the largest funder of health and care research in the UK; specifically advocating for PPI in research with particular interest in the involvement of marginalised groups [3].

Despite this, care home residents continue to be under-represented, with minimal understanding of the benefits of utilising their first-hand experiences in research [2, 3]. Older adults account for the largest growing segment of the population, of which approximately half a million live in 19,000 care homes in the UK [1, 5]. Younger adults aged 18–64 who have learning disabilities, mental health problems and other social needs may also live in residential care. Younger adults represent one-third of care users in the UK which accounts for over half of local authority spending [6]. However, historically there has been much less research conducted within these communities compared to individuals within hospital settings; with further disparities between the care received from older people in social care compared to younger adults [1, 6, 7]. ‘Care home’ is commonly used as a catch-all term which incorporates nursing and residential homes and is defined by Luff et al. [8] as “all residential long-term care settings which provide group living and personal and/or nursing care for older people and other adults”.

Adults dependent on social care are the greatest recipients of healthcare services, with many experiencing complex multimorbidity, increasing frailty and dependency on nursing staff [5, 9]. Care home residents are an under-served group in research partly due to communication challenges with hearing, visual and cognitive impairments which presents methodological challenges including difficulty obtaining informed consent, the additional time needed to support participation, challenges in securing funding, and lack of expertise in research involving these groups [4, 10]. The absence of representative and inclusive research in this population group can result in findings that are biased and mismatched to the needs of care home residents; thus, precipitating ineffective treatments, divergent agendas and misrepresentation [11].

When designing and conducting research, it is important embed public involvement throughout which incorporates the lived experience of care home residents and caregivers [4, 12] alongside the scientific knowledge of academic researchers. This involvement can be viewed as a continuum ranging from individuals being consulted about their views and opinions through to being co-researchers, co-producers, or as project leaders of the research [13, 14]. They can become active partners within the research design, delivery, data analysis and dissemination [1, 13, 14]. Whilst there is there is a growing recognition of the value of PPI in care home research, at present, there is insufficient knowledge about effective strategies to involve vulnerable adults as research partners with meaningful impact [15], particularly in care home settings. Previous reviews have focused solely on the involvement of care home residents [16], however care homes can be viewed as ‘communities of care’ and so the perspectives of other stakeholders are often involved. An understanding of how best to involve multiple stakeholders, who will have a range of roles and needs, and in different types of research and care home contexts has yet to be explored.

To address this gap, we aimed to systematically identify and synthesise published studies to identify effective PPI approaches used in care home research. The objectives were to: (1) outline what approaches were used in PPI in care home research and the key stakeholders involved; (2) describe the role of PPI in different care home contexts and (3) identify stakeholders’ experiences and attitudes towards PPI in care home research. In this review, ‘public’ refers to residents (older people and adults with disabilities dependent on social care), relatives, caregivers and representative organisations. These groups can be considered key stakeholders in care home research. Approaches were considered ‘effective’ where the researchers who reported the study had viewed their experience of PPI activity as positive or having been successful in achieving its aims.

The findings from this systematic review can be used to improve the standard of PPI in care home research by identifying the best approaches to create inclusive opportunities for care home stakeholders [5]. Better understanding about how to involve key stakeholders in care home research will enhance the quality of studies being conducted, ensure that health and care research is meaningful and leads to improvement in the care that these groups receive, and help to address the challenges of social exclusion, injustice, and marginalisation that members of these groups can experience [4, 5].

Methods

This systematic review is reported in accordance with the 2020 Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [17]. The protocol was prospectively registered in the PROSPERO 2021 database (CRD42021293353). A narrative synthesis was adopted as it was likely there would be wide heterogeneity between the studies. This approach uses data to ‘tell a story’ and was guided by the Cochrane Collaboration and Economics and Social Research Council [18, 19].

Eligibility criteria

This review was limited to English language studies without date limits on the publication year. Studies were included if they reported PPI research in care homes, residential homes, or nursing homes regardless of the care home population (older people or younger adults with disabilities), research topic or study methodology. Studies were excluded if they did not report PPI in care home research, key stakeholders were not included, or the study was conducted in other social care settings. The SPIDER framework (Setting, Phenomenon of interest, Design, Evaluation, Research design) [20] was utilised to develop the eligibility criteria (Table 1). This approach is best suited for qualitative research and enables the exploration of behaviours and individual experiences.

Table 1 Study eligibility criteria
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Systematic search strategy

A search of five electronic databases (CINAHL, Embase, MEDLINE, PsycINFO and Scopus) was conducted in November 2021. The search strategy was developed with guidance from a subject librarian (Appendix 1) to capture the three key concepts of the research question comprising (1) PPI in research, (2) care homes and (3) attitudes and approaches. The search strings were adapted from NIHR recommendations on search terms for ‘public involvement’ [21], and two systematic reviews exploring end-of-life care in care homes [22] and attitudes and approaches to PPI in research [23]. Boolean search terms ‘OR’ and ‘AND’ were used to translate the research question into research string that captured the relevant articles from bibliographic databases.

A supplementary lateral search of additional literature resources was conducted by searching reference lists of studies and applying comprehensive pearl-growing techniques to broaden the search through forward citation of included studies (completed February 2022). Additional studies were retrieved from web searching and searching a topic-specific journal (Research Involvement and Engagement) by adapting the search concepts used in the electronic databases to create specific search strategies for additional literature resources.

Study selection

De-duplicated studies were exported into EndNote 20.2. Study selection comprised of three stages: firstly, the titles and abstracts from the initial literature search were screened by the first author. Of these studies, 10% were then double screened by another researcher to ensure consistency. Secondly, the full text of included articles (n = 94) were independently reviewed by two co-authors for eligibility, the reasons for exclusion were recorded in accordance with the PRISMA guidance [17]. Records where the full text was not retrievable were considered ineligible. Thirdly, disagreements over study eligibility of those classified as ‘maybe’ (n = 28) and ‘conflict’ (n = 15) were resolved by reviewing the full text of the disputed articles and comparing the decision-making of included articles with the disputed articles through transparent discussion. A third researcher was consulted where necessary to reach a consensus and develop a clearer criterion to reduce uncertainty going forward.

Critical appraisal

In accordance with the published protocol, quality assessment of included studies was attempted using the Mixed Methods Appraisal Tool (MMAT) 2018 version which enables appraisal of different study designs [24]. However, during the critical appraisal process, the MMAT was found to be inappropriate due to the lack of consistency of PPI reporting and absence of established methodological rigour. A review of other appraisal tools failed to identify an alternative appropriate tool for assessing the reporting of PPI. Hence, studies were not excluded based on methodological quality but the issues that arose with the reporting of PPI in research were explored in the data synthesis stage as recommended in the narrative synthesis guidance.

Data extraction

A data extraction tool was developed for this review with guidance from Backhouse et al. [3]. Extracted data included study details, research methodology, recruitment, the barriers and elements enhancing PPI in research (Appendix 2). All data extraction was conducted by the first author, with double data extraction of 10% of studies performed by the other two authors. Due to the variability and heterogeneity of the PPI reporting within the included articles, the regular discussions with the research team during the study selection led to a robust framework when standardising subjective assessment. The data extraction forms of the included articles were imported into NVivo 12 software to aid thematic code generation.

Data synthesis

Codes were created to capture the meaning of key underlying and recurring concepts and were organised into themes which were iteratively developed using headings from the data extraction tool. Definitions for each generated theme were developed and refined through regular discussions amongst the research team.

Results

Systematic search

Database searches yielded 3671 papers with an additional 15 papers identified from other sources. Following de-duplication this resulted in a total of 2314 records, of which 94 studies were retrieved for full-text assessment following identification of studies via databases (n = 79) and other methods (n = 15) (Fig. 1, PRISMA Diagram). Using the inclusion criteria, 27 studies were subsequently included in the analysis.

Fig. 1
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PRISMA flow diagram

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The characteristics of the studies are reported in Table 2. Most studies referred to older people but varied in study topic and degree of stakeholder involvement. Only one study [25] focused on younger adults with disabilities living in care homes. Study locations included the UK (n = 13), Europe (n = 5), Canada (n = 5), USA (n = 3) and South America (n = 1).

Table 2 Study summary characteristics
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Synthesis of findings

An effective approach to PPI was defined by reviewing stakeholders’ experiences and attitudes to PPI in care home research as having been positive or achieving its aims. Effective approaches to PPI in care home research were grouped into five themes: valuing stakeholders’ perspectives; ensuring inclusivity and transparency; awareness of the multi-faceted research context; maintaining flexibility and adaptability and utilising resources and wider support. Table 3 illustrates the overarching themes with associated definitions and examples from the included studies.

Table 3 Definitions of overarching themes and associated examples
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Each of the five overarching themes have associated subthemes which is illustrated in the conceptual diagram shown in Fig. 2.

Fig. 2
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Conceptual map of an effective ppi approach in research

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Valuing stakeholders’ perspectives

Experts by experience

For PPI in care home research to be effective, stakeholders should be valued as experts due to their authentic experiential knowledge. Most studies formulated inclusion criteria that encapsulated the first-hand experiences of stakeholders however physical impairments such as reduced sight, hearing and mobility challenged the involvement of residents [36, 38]. Despite this, one study defined residents as ‘visionaries’ and included residents regardless of physical or memory difficulties; empowering their role as active research partners [44]. Directly involving PPI stakeholders in the data analysis unsettled some researchers as they were reluctant to view PPI stakeholders as ‘experts by experience’ [36, 40, 50].

Achieving meaningful impact

The insights shared by PPI stakeholders should guide the research for meaningful impact [30]. Three studies centralised PPI stakeholders within the study design which strengthened the quality and relevance of the research methodology [25, 32, 34]. Another study utilised PPI stakeholders’ recommendations to involve care home managers in recruitment which ultimately led to a 3% increase in participant recruitment per home [40]. Despite this, the overall benefits of PPI approaches within research appeared to be superficial and ineffective in other studies [41, 44]. However, acknowledging the distinctive and valuable contribution of PPI stakeholders was regarded an effective PPI approach [32, 40, 49].

Amplified voice

Extending the influence of PPI stakeholders beyond the research design to dissemination promotes the resonance and impact of the research findings [45, 46]. As co-authors, PPI stakeholders provided a reflective perspective that was tailored to their specific needs by promoting conversations, facilitating group discussions and interviews, pilot testing of interventions with subsequent findings relayed to the academic team [37, 38, 50]. A user-centred approach empowers PPI stakeholders and offers quality assurance throughout the study, as the involvement is tailored to the specific needs and strengths of the PPI stakeholders. Furthermore, dissemination at national conferences offered an added sense of authenticity and credibility [27, 30, 37]. This amplified PPI stakeholder input improves pathways for future quality improvement projects by increasing the applicability of the research findings [35, 43].

Inclusivity and transparency

Spectrum of involvement

PPI stakeholders had a variety of roles in studies. The continuum of involvement was vast including PPI stakeholder contribution at iterative stages of the research design [28, 32, 49] during intervention development [37, 47, 48], the production of study materials [25, 46], data analysis [29, 39, 43] and facilitating discussions [32, 50] which has been shown to enhance research outcomes. An effective PPI approach extends the role of PPI stakeholders throughout all aspects of research from encouraging attendance in face-to-face research meetings, asking for feedback on projects via preferred communication methods to contribution in NIHR-funded reviews [46]. This comprehensive involvement of PPI stakeholders enables distinct and often unheard perspectives to permeate research.

Safe communicative space

Inclusive and transparent communication between PPI stakeholders and researchers provided a safe space to share opinions and lived experiences [51]. This was achieved by hosting separate meetings for PPI stakeholders [48], eliminating academic jargon [44] to building a rapport and fostering professional relationships [33, 40] resulting in sustained willingness to participate [34, 35]. A safe communicative space enables PPI stakeholders to interact with academics with authenticity and ‘change the dynamic in a positive way’, nurturing enjoyable collaborations that extend beyond professional settings to informal social events [26].

Multi-faceted research context

Balancing power dynamics

The hierarchical positioning between PPI stakeholders and researchers and between care home administration and residents was influential to PPI in care home research [26, 36]. Creating a power balance between researchers and PPI stakeholders enabled polyvocal perspectives, trust and openness [27, 28, 30, 43]. An imbalance was potentiated through language and discourse [51] and where the role of PPI stakeholders within decision-making was undefined [34, 41] or where tension was created between PPI stakeholders and researchers due to differing expectations about, and understanding of, research timescales [45, 48]. As a result, the views and inputs of residents were often overwhelmed and overpowered by multiple perspectives from clinical researchers, staff and even relatives. This highlights existing power dynamics and the complexities of addressing research translation and implementing research roles with PPI stakeholders [35]. An effective PPI approach addressed the inherent power relationships within research to encourage maximal involvement.

Navigating the research topic

Many studies noted that the greater the complexity and difficulty of the research concepts, the more disengaged and overwhelmed PPI stakeholders become. The vast amount of complex information led to projects sometimes being ‘out-of-scope’ for some stakeholders [28, 50] which was exacerbated through academic jargon and the pace of discussions [26, 48]. This cognitive burden was sometimes coupled with the physical demand of the research schedule [30, 36, 38] and emotional responses provoked by the research topic [33]. Effective PPI used lay summaries and language which connected with the initial knowledge of PPI stakeholders to create a comfortable research environment [40, 41].

Appropriate recruitment process

Utilising a variety of strategies to recruit PPI stakeholders and care organisations increased the generalisability of the findings [39, 42]. Advertisements, posters and flyers were distributed to PPI stakeholders via local publicity; using attractive taglines to engage specific stakeholder groups [32, 46, 51]. Existing recruitment structures were also exploited via volunteer forums, pre-established PPI groups and attendance to local stakeholder conferences [26, 40, 48]. Some studies adopted a top-down recruitment approach where PPI stakeholders were nominated and purposively selected [29, 38, 51]. Thus, appropriate consideration of recruitment methods increased the representativeness of PPI stakeholder input.

Flexibility and adaptability

Optimising accessibility

Many studies reported the attrition of PPI stakeholders, particularly care home staff due to their demanding work schedules, sickness and differing priorities [49,50,51]. This high staff turnover resulted in irregularity in their involvement [30, 35, 44]. To attain an effective PPI approach in care home research, adaptations to the research schedule were required to sufficiently incorporate care home staff within research [41, 45].

Tailoring communication methods

To sustain collective involvement of PPI stakeholders, strategic and flexible ways of communication need to be adopted. Intentional dialogue pathways such as email, telephone or letters were instrumental methods of interaction [26, 32, 48, 51]. Creative methods such as role play and parallel workshops were utilised [37, 42, 46] and virtual meetings once a rapport was established [25, 31]. This approach differs to conventional dialogue pathways as it provides a platform for PPI stakeholders to express their interpretations of research findings and contribute to the design process in an informal and relaxed setting; thus, promoting collaboration and a transparent passage of information with the research team. Some studies recognised the challenges of digital literacy in older adults and designated an ‘embedded researcher’ who had an ‘open-door’ policy to facilitate the concerns of the PPI stakeholders [26, 32, 40, 45].

Resources and wider support

Additional funding

A financial budget that incorporates the costly elements of PPI enhanced the effectiveness of PPI in one study [26]. Some studies covered expenses for travel, printing, telephone use [34, 50] and the cost of time [32, 33, 49]. Other studies offered an honorarium payment for participation [38, 45] in one study, staff involvement was part of a secondment arrangement funded by government [29]; whilst other studies used national guidelines for user involvement to stipulate the value of travel expenses and honorariums that PPI stakeholders should receive [33]. But not all PPI stakeholders were rewarded [34] and the payment amount was not usually divulged within the reports [43, 45].

Recognising training needs

An effective PPI approach considered the use of training programmes to help PPI stakeholders ‘find direction’ within the research [50]. Most studies focused on practical research skills including, data collection, analysis and interviewing [39, 41] which varied in length from 1 day programmes to several weeks [32, 34] and was conducted by specialists in the field [25, 40]. Opposingly, one study preferred the pre-existing skills, expertise and perspectives of the PPI stakeholders rather than academic training [26].

Discussion

The findings from this review support a growing a body of literature that highlights the value PPI brings to research, improving its relevance and applicability [53,54,55,56]. Care home residents and staff have unique insights as co-researchers, their experiential knowledge providing valuable learning opportunities for academic researchers [4]. The authentic experiences of PPI stakeholders can encourage practice improvement and culture change within research where residents and staff become ‘professionalised users’ and ‘experts by experience’ within research [1, 2, 4, 14]. For this shift to occur with meaningful involvement between PPI stakeholders and academic staff, mutual partnerships and relationships need to be fostered which are flexible in power-sharing and decision-making [57]. Previous studies have identified effective approaches to the inclusion of diverse groups [58] and people receiving palliative and end of life care [59]. This review identified several factors specifically associated with effective PPI in care home research in addition to similar themes around gatekeeping, communication, and a lack of reporting of PPI activities.

Due to the lack of consistency of PPI reporting in included studies, and an absence of established methodological rigour, the role of PPI was variable according to the care establishment and research context. The transparency of the PPI process was variable particularly within nursing homes where PPI stakeholders were either selected according to a convenience sample and overall representation with limited explanation of the PPI recruitment process [29, 42, 47, 49]. This is juxtaposed to formal recruitment methods where stakeholders were encouraged to enrol via meetings, conferences and online platforms and were informed of the time commitments, duration of participation and their role in the project [30, 38, 48].

The degree of stakeholder collaboration varied significantly, often care home residents had limited involvement compared to other stakeholder groups. Key stakeholders referred to residents (older people and adults with disabilities), relatives, caregivers and representative organisations. However, due to power dynamics and polyvocal perspectives there were conflicts of interest resulting in the views of residents being overpowered by caregivers and representative organisations [27, 45]. Moreover, numerous studies have highlighted the challenges of ensuring broad representation of vulnerable adults in research due to physical and cognitive impairments which affect the level of participation [2, 4, 54]. These individual-led barriers to involvement are often reasons why care home residents are often excluded from studies [60] or only informally involved [3], whilst fitter and more independent residents tend to be more active PPI stakeholders [61].

The negative perceptions associated with care homes often limits residents’ engagement in research as sole participants; becoming the ‘researched’ as opposed to the ‘co-researchers’. This was highlighted in the study with younger adults [25] where despite being younger than 65 years old, their physical impairments of cerebral palsy, multiple sclerosis and muscular dystrophy limited the extent of their involvement in the research setup. Notably, only one study explored the role of PPI with younger adults in care homes which underscores the preconceived ideas of care home residents, their abilities and degree of involvement in research. Arguably, the disparities of PPI and research engagement within care homes extends beyond age but is instead bound by the societal perceptions of the catch-all term ‘care home’—of which more transparent research is needed to address.

The growing importance of equality, diversity and inclusivity in research offers a diverse perspective to recruitment strategies. Representation from those with varying educational attainment, gender, geography, and ethnicity provides a broader perspective on the issues affecting vulnerable adults [9, 10, 14]. Black et al. [14] had a diverse sample of PPI stakeholders with an equal split of male and females, three different ethnicity categories and a wide range of ages which created a welcoming research environment and improved research partnerships. Bindels et al. [4] noted gender and educational attainment influence the experience of ageing with differing health behaviours and outcomes. Consequently, an effective PPI approach will adopt appropriate recruitment processes to retrieve diverse personal perspectives. Additionally, conducting research in care homes with younger residents [25] may require alternative approaches to PPI as the challenges and approaches identified in this review may be specific to the physical and cognitive disabilities more often encountered by older people or may not be applicable to other care settings such as supported accommodation.

Care home residents can aid dissemination, research findings should be distributed to non-academic settings by PPI stakeholders who are sensitive to the tone of dissemination [1]. For example, Gridley et al. [62] involved people with dementia to produce a short film and a plain English summary to disseminate the results. The PPI stakeholders included people with dementia, care staff and family caregivers. Similarly, Bethell et al. [63] purposefully engaged people with dementia in developing surveys, priority-setting and implementing recommendations. This continuum of involvement encourages democratisation of research that is inclusive and appropriately aligned to the needs of PPI stakeholders [2, 4].

The first-hand experiences and reflections of stakeholders’ regarding their role of PPI in care home research was not always explicitly stated. Some articles highlighted the perception of being ill-informed or unknowledgeable regarding the research concepts [50] whilst other articles evaluated the success of the PPI project through dialogue excerpts, detailing the dissemination attempts and outlining motivations for involvement [43, 44, 46, 48]. Whereas the perceived impact and the evaluation of PPI outcomes was implied for most articles [25, 36, 39, 41, 42, 45, 47]. Incorporating critical and collective reflections of PPI stakeholders and researchers within research projects will develop a transparent working environment that promotes collaboration between science and practice [35].

Strengths and limitations

This review was prospectively reported on PROSPERO. The inclusion criteria provided a platform for care home residents who are often underrepresented in research, whilst recognising that the perspectives and experiences of a wider range of stakeholders are often valuable to include. However, challenges were encountered during the screening process as PPI is not always being reported in the title, abstract or study aims which may have led to relevant studies not being included. Additionally, the lack of clear definitions around involvement, participation, engagement, and co-production made it difficult to differentiate between the role of PPI stakeholders within the research design. Consequently, more research is required to characterise key terminology along the PPI continuum and to develop tools to appraise the quality of articles reporting PPI activities or approaches. The variable quality of PPI reporting has been widely reported elsewhere and led to the development of reporting frameworks such as GRIPP2 [64].

Our findings are supported by a scoping review which was published following our review and which focused on mapping co-production approaches to care home research for older adults [16]. As in our review which considered the wider spectrum of public involvement, the review of co-production approaches identified a broad range of stakeholder involvement and highlighted the importance of reciprocal relationships and ensuring inclusive opportunities [16].

Due to resource limitations public involvement was not included in the research design, analysis or authorship of this study which, if incorporated, would have enhanced the outcomes and conduct of the study and provide opportunities to apply the research findings into practice. We were similarly limited to English language studies which impacted the representativeness of the sample. Notably, most of the studies were conducted prior to the COVID-19 pandemic during which there were seismic shifts in the nature and mode of PPI activities. Other limitations included the risk of bias, with a single reviewer of full-text eligibility and data extraction and a sample independently reviewed by a second reviewer. This may have resulted in subjective assessment and key methodological concerns remaining unidentified.

Practice Implications

These findings unify current understanding of incorporating care home residents as PPI members within research. Utilising evidence-based insights with appropriate adjustments to PPI methods (Fig. 2), care home residents and marginalised groups can engage within research, resulting in findings that are more relevant to the target population.

We have used the findings from this review to develop practical recommendations that will support more inclusive and effective PPI in care home research (Table 4).

Table 4 Practical recommendations to initiate effective PPI approaches within care home research
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Future research

We have used the evidence-based PPI guidelines to propose practical recommendations which can be applied in future care home research. Further exploration is needed to develop strategies for involving residents with greater support needs and time-pressured care home staff within research. Strategies are also needed which extend beyond the traditional methods of PPI to incorporate more innovative approaches within different study designs, whilst establishing appraisal tools to adequately measure and report the quality of PPI.

Conclusion

People living in care homes often require the highest and most complex level of care, whose needs are met by a large and diverse workforce. An effective PPI approach transforms the view of residents and staff as consumers with a passive voice to owners of research with active and valuable participation in the creation of knowledge. This is achieved by careful consideration of five person-centred factors: valuing stakeholders’ perspectives, ensuring inclusivity and transparency, taking account of the multi-faceted research context, maintaining flexibility and adaptability whilst utilising resources and wider support. It is hoped that the practical recommendations given can transform the research culture and create a research environment that is representative and accessible to this under-served group regardless of age, experience, or health status.